Thursday, March 22, 2012

Update

Hi friends and family,

I plan to be in bed in a few minutes so this is going to be a super quick update on our Will man!! This has actually been the best week we have had in months!! He started back at school on Monday after missing a month. He seemed alert and happy to be back. We love all his teachers and therapists and honestly I was excited to see them all again too :-) It is so wonderful to see William alert and smiling again!! He has really enjoyed this beautiful weather we are having in Rochester.

On Monday we had a swallow study which evaluates how safely he is eating. Unfortunately the study showed that he is aspirating ( going into his lungs) on liquids and purees. He lost some muscle control which is affecting his eating abilities. So, the g-tube is now the best choice for him to get his nutrition in a safe manner. We are

in the process of setting up that surgery. He will still be able to eat smaller amounts by mouth for pleasure though :-)

As for his body temperature... he has been staying at higher ranges but still dipping down to 92.7 or so. At our upcoming consult with neurology we will discuss that further. Fortunately his heart rate and oxygen levels are staying within normal limits. A good sign...

Now, I am off to bed! Goodnight and thank you again for all your thoughts and prayers!

1 comment:

so happy to read this update Erin. You have been in my thoughts often!!! It sure sounds like you and William have had a MUCH deserved better week. With exception of needing the G-tube but I hope that ultimately that brings you a little less stress with his eating/hydration. Hugs!!!

Fall 2007

The beginning of "us"

My husband Wayne and I met at SUNY Geneseo while pursuing degrees in Geography (wayne) and Speech therapy (me). We married in rural Vermont during the winter of 2003. We enjoy outdoor activities; hiking, canoeing, and camping. I have a passion for reading and baking. I also experiment in gardening, cooking, and blogging :-)

Adirondacks Summer 2010

Enter: the twins

William and Ella entered the world on August 3, 2007 twenty minutes apart weighing 7lbs 2oz and 5lbs 2oz. They are blond haired beauties, William with enchanting ringlets and Ella with silky smooth straight locks. Ella loves water; William does not. William loves sweets, especially ice cream; Ella does not. Ella is an early riser and William loves to stay up late. They are different in many ways yet share an incredible "twin bond." William has a rare brain malformation that has resulted in significant delays and health concerns including epilepsy and cortical blindness. These twins have made a tremendous impact on the lives around them; especially their mommy's! I love them both so much and each day I share with them is precious.